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Welcome, Gumlan


#1

@Gumlan

Hello, Gumlan. Welcome to Living With Ben’s Friends. Getting diagnosed is always the first step towards recovery, so I’m glad we got there already! I’m happy you found us so early, and I hope you can meet great friends and family here. Your profile caught my eye instantly when I spot the word “German Shepherd”. Not gonna lie, I LOVE dogs. I can’t begin articulate my feelings towards these cute beings. I hope your German Shepherd is having all the fun it (Is it a he or a she, if you don’t mind sharing?) can, and is living a happy life. Please feel free to scroll around or start your own thread if you have any questions or concerns. Welcome aboard Gumlan!

With Love,

Christie :heart:


#2

Thanis Christine! I forgot to mention its a spinal avm fistula/malformation. Guess what I’m in the ICU now after Angiogram Embololuzation. I will post my story later after I get out😍


#3

Hello @Gumlan. I’m looking forward to reading your story.

We have some things in common. I have a Spinal Dural Arteriovenous Fistula. My angiogram is coming up on June 19th followed by surgery on June 20th. I wasn’t as fortunate as you. Mine wasn’t discovered until eight years after the onset of symptoms (a rant for another day).

Like @Christie_BFintern, I love dogs. And, like you, had a German Shepherd (“Misha”). I rescued her when she was a pup (another great story) and we shared many adventures well into her senior years. I rescued another pup in 2012, and Misha instinctively took on the “Mom” role. Unfortunately, Misha suffered a massive stroke this past September and sadly, at age 14 ½ years, passed. I’ve attached a picture I took as they were racing towards me a few years back.

I’ve elected surgery rather than embolization and am planning on posting in the @Spinal group as I recover post-op.

Best wishes in your recovery.

Brent


#4

Hi Brent! Yes we do have something in common. Mine is also spinal dural AV fistula. I’m a 43 year old asian american female. That’s something we probably dont have in common haha.

I’m having trouble figuring out how to navigate this little box that I’m typing in on my phone so.

Good luck w your upcoming angio and surgery.:hugs:
8 years is a long time to wait!!! You must have been through so much. I’m impressed by your stamina. I would love to hear the rant sometime. I’m so happy I found this support group.

They did the angio and glue embo but couldn’t get all the fistula. I’m still in the hospital. Now they want me to stay here and do acute rehab physical therapy for 2 weeks and do another angio in 1-2 weeks. Depending on the results of 2nd angio they might do surgery to get the remaining fistula. My angio/embo procedure that took place the other day lasted 7 hours. I’m still recovering from it to be honest. Its weird having someone help me go to the bathroom (commode) all the time. Plus my head seems to be foggy and I can’t remember things well right now. Just taking it day by day right now.

Misha looks like she was the loveliest dog. you’re so lucky to have had all that time w her. I love that cool action pic!!! GSD “moms” are the best. I will attach a pic of Layla. Her ears were cut by previous owner. She has a wheelchair now to get around.

Hi Christie!!


#5

Well Stephanie, I’m going to go out on a limb here and guess. Had I been through a 7-hr hospital procedure recently, I would likely be feeling a tad foggy as well … just saying!

And you are correct on all three fronts. I am neither Asian, nor American, nor am I female :wink:. I like your sense of humour.

It’s disheartening to hear the embolization wasn’t 100% successful, but it sounds like your doctors have a plan. Remaining positive is so important.

That’s a good picture of Layla. She looks like she is ready to tackle whatever comes next … I am sure you are too.

Brent


#6

She is such an angle I’m screaming inside when I saw the picture! I can tell she’s so happy having you as her caretaker - just look at her smile in this photo! You must be doing a great job! Thank you for sharing the picture, it made my day!


#7

Thanks Christie! My husband has been taking care of Layla while I’m in the hospital. He says she can’t wait for me to come home.

Good luck Brent on your upcoming angio and surgery. Just curious where you live? I hope everything goes smooth smooth smoothly.


#8

Hello Stephanie,

How did your physiotherapy go this week? Has a date been set for your next Angiogram?

Thank you for your well-wishes with my upcoming procedures. I live just outside of Calgary, Alberta here in Canada. Calgary is where the procedures are being done.

Brent


#9

Hi Brent the second angio was today. It showed the fistula was still there so they now recommend surgery. They said ideally the surgery would be scheduled within the next week or so. I’m glad they didnt have to catheterize me afterwards (I was having difficulty emptying my bladder but I just stayed in the bathroom trying all different methods to try to go).


#10

Hi Brent my surgery (laminotomy T11-T12) ended happening yesterday. When you have time I want to hear how your surgery went.

The physio was ok. Bc of the two angios I had pain in both femoral sites for about a week which I guess prevented me from making more progress. Still I went from walker to cane in about a week. Stairs and street curbs are scary. I’m still prone right now from the laminotomy.


#11

Also the doctors want to do another follow up angio tomorrow. Which is 4 procedures (angiogram and embolization then angio then surgery then angio) in a roughly 2 week span. Then well see if another round of in house rehab would be authorized by my insurance. Otherwise I finally get to go home. Everyone is concerned Layla presents a fall risk but I feel safe around her.


#12

Hi Brent hope your post op recovery is going well. I just wanted to let you know I’m thinking about you and wishing you all the best and want to know how your surgery went when you have the time to write. I finally am home after 23 days in the hospital. Am on the wait list for outpatient rehab.


#13

Hello Stephanie,

My surgery went well. There was a slight complication revealed in the Angiogram so my surgeon was prepared went he went in. I wrote a short blurb about the procedure earlier today and have been home for one week as of today. I was only in the hospital a week.

I have a follow-up with the surgeon mid-August. My discharge MRI shows a lot of cord compression and swelling from T11 to the Conus which will hopefully subside over the next several weeks. I have been referred to a Community Accessibility Rehabilitation Neurological Sciences program which should start in about 6 weeks.

I have experienced some regression especially in the area of my ability to walk. I’m sure if it was possible, Penquins would pay good money to watch me learn to walk again :joy:.

I’m glad to see you are at home again. Layla must have been overjoyed to see you again. I know Olivia was, and still is, excited to have me back at home.

I’ll be writing some more about my experience and ongoing recovery efforts.

Take care and stay positive.

Brent


#14

Brent! So glad to read that your surgery went all right, and that you are on the mend again. Have you had your followup with the surgeon yet?

Let us know how things are going!

Seenie from Moderator Support


#15

Hello Seenie,

I was planning an update after I started Physio. My appointment was July 31st, but the therapist decided against conducting any therapy until after my surgeon officially clears me. (Liability concerns …:face_with_raised_eyebrow:)

Anyway, my appointment with the surgeon is August 16th (4 more days) and I don’t foresee any issues clearing me for Physio.

Assuming everything goes as planned, I commence Physio 2 X Week for 8 weeks commencing August 22nd. I’ll be posting on my progress then.:grinning:

Say “Hey!” to the gang at ModSupport.

Brent


#16

Ah you’re making progress. Good to hear Brent!

I’ll pass your good wishes on for sure!

Seenie